Making Sense of Suffering and Death: How Health Care Providers’ Construct Meanings in a Neonatal Intensive Care Unit

ABSTRACT

Biomedical technology has progressed at a pace that has created a new set of patient care dilemmas. Health care providers in intensive care units where life-sustaining therapies are both initiated and withdrawn encounter clinical scenarios that raise new existential, theological, and moral questions. We hypothesized that there might be broad patterns in how such staff understand these questions and make sense and meaning from their work. Such meaning making might be the key to working with the critically ill and dying while helping to create and sustain a meaningful context for personal living. This article presents themes evident in an in depth analysis of open-text responses to a spiritual and religious questionnaire survey completed by staff in one neonatal intensive care unit. The data reveal the central roles of perceived infant suffering and death in these providers’ work experience and details how they understand the ultimate meaning of the suffering and death. We investigate patterns in how different providers articulate their individual attributes and motivations for working in intensive care. We found a surprising range of religious, spiritual, existential, and other meaning-making systems that underpin how staffs understand their work and how, certain of them, even define their purpose in life as caring for critically ill infants and their families.

Keywords

Wendy Cadge received her Ph.D. in sociology from Princeton University. She is currently an Assistant Professor of Sociology at Bowdoin College and a Robert Wood Johnson Foundation Scholar in Health Policy Research at Harvard University. Her research examines a range of topics related to religion in contemporary American life including religious pluralism, religion & immigration, religion & sexuality, and religion & the arts. Her first book is titled, Heartwood: the First Generation of Theravada Buddhism in America (Chicago: University of Chicago Press, 2005). Dr. Cadge’s current research focuses on the history, presence, and significance of religion and spirituality in American hospitals. Elizabeth A. Catlin is a senior faculty neonatologist at the Massachusetts General Hospital (MGH) in Boston and an Associate Professor of Pediatrics, Harvard Medical School. Dr. Catlin completed general pediatric training at Tufts University School of Medicine, Boston, followed by subspecialty training in neonatal–perinatal medicine at Brown University School of Medicine, Providence, Rhode Island. Dr. Catlin served as Chief of Neonatology at MGH from 1992 to 2004. She completed a Kenneth B. Schwartz Foundation fellowship in Clinical Pastoral Education in 1999. Dr. Catlin has a long-standing interest in spiritual distress, tragic decision-making, suffering, bereavement, and religious components of patient care in neonatal intensive care. Correspondence to Elizabeth A. Catlin, ecatlin@partners.org.

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